280. Too good to last

I’ve been spoilt. If I were superstitious, I’d say Dr U has taken my good luck with him. But I’m not that stupid, I hope.

Exceptional service from St James’s. Dr O put in the request for a CT scan which she said would take a couple of weeks at least. That was Friday afternoon. Monday morning, I got a call - could I go in Tuesday afternoon (obviously a cancellation) so I leapt at the chance. Taxi there so I could take my trusted lorazepam and not fidget, lovely kind Lisa to pick us up on her way home from work.

Maybe it’s the lorazepam, maybe it’s my stoicism, but I don’t seem to suffer from scanxiety. It’s a huge problem for most people who rely on CT, PET and MRI scans to know what’s happening in their body. Maybe it was that lost kidney that sealed the CT scan’s fate for me but I regard it as something the oncologist needs but not of much interest to me. I’ve had too many “suspicious areas” that have led to nothing, as well as metastasis to my sternum (which turned out to be a poorly healed fracture), false trails that could have caused months of fear had I let it happen.

Then, Thursday afternoon, the phone rings. It’s a ‘new’ doctor whose name I didn’t catch assuring me that my CT scan showed no spread of the cancer BUT… I have a blood clot now, close to one kidney. Untreated, I will lose the kidney, but it’s easily treated with a blood thinner. He then went into great detail of the pros and cons of daily, self-administered injections versus tablets. Once we established my preference for the latter, it led to a discussion about swallowing tablets and his insistence that I grab a computer and look them up. They look manageable so he said he’d prescribe them and Boots would deliver Friday afternoon. I didn’t think to say that I’d be in that morning and could pick them up. I wish I had as Boots didn’t deliver. Roll on Monday and hope that the doctor’s “immediately” will allow for a few extra days!

So there we have it. I’m still fortunate that my scans show no additional cancer and even more fortunate that the abdominal one has picked out a blood clot speedily. With luck and blood thinners, it will disperse of its own accord in a few weeks and treatment may only last 3 months. I will need to see the clot specialist (no jokes) in 3 months time and see what they say. I may have to continue for 6 months. Apparently chemo can make the blood claggy (their word, rather graphic). I now have to carry a card to show anyone who dares approach me with a needle as I may bleed profusely! (It reminded me of when I had to go to A&E during my primary chemo and spurted all over the nurse who came to take my blood - more than she bargained for). But I also have to deal with this tiny nagging image I had to deal with when I first got my diagnosis, the thought of all these nasty TN cells running rampant in my body. This time it’s that nagging thought that blood clots like to travel - what if it went to my pulmonary artery or my brain! Give me a few days and I’ll have that sorted - I’ll be too tied up in my unbeatable anxiety that new medication may make me sick lol.

If I’m really honest, I’m also having to deal with a sense of abandonment - something goes wrong the week after Dr U has left. It’s like my Inner Child feels he’s left me high and dry and there’s a little bit of hurt there. I have been so spoilt and so lucky for 2 years. I really do hope the return to Dublin works out for them all and it’s the very best decision. He’s left a huge hole to be filled and some very picky patients!

SCANXIETY

Apparently it’s a recognised term now (I thought it had been made up by a few Facebook friends): 

It should also say it covers a prolonged period following the scan as people dread what the results may be. I keep asking why people assume it will be bad when there’s as much chance of it being good news, but no one has an answer. Instinct says fear the worst. I’ve had two years of ‘nothing of note’ results and become blasé. I wonder now if that will change and I join the scanxiety brigade. Hope not!

Yesterday’s support group meeting was very good. One of the prescribing pharmacists came and chatted about her work. None of us realised that almost all the chemotherapy is actually made up in a lab sited within the Oncology department. It seems some drugs are so hard to obtain or have such a short life that they can’t even be made up until it’s been confirmed that the recipient has a) turned up and b) is fit to receive the treatment. It does explain the long delays for some IV treatments, though most people are fairly stoical about the delays. I think my longest was the 1pm appointment when I got home at 8pm! We had an excellent conversation, including questions about contraindications, side effects etc, then, after she’d left, we talked about the tragic loss of Georgina and how hard it is to come to terms with three deaths in as many months. I think some of them were thinking who’s next?

Next should expect a run on the bright blue coat. I was approached by 2 strangers before I even got to the meeting, and then had several admiring comments from members of the group. I have to say it really lives up to my description of In Your Face Blue!

279. Stuck for a title

Yesterday I was seen by a new consultant, Dr O, a young, elegant woman who just asked a couple of questions and sent me on my way. I had to ask for my blood results - which are still raised but stable. Certainly nothing they are worried about. She seemed impressed that I’ve been on capecitabine for so long - whether she was impressed by my fortitude or by the fact that the stuff is miraculously working, I’m not sure. Maybe I should ask. I did have an important question for her so I waited till she’d finished writing up my prescription and then…well, I still have no idea what it was.

Age?

Chemo brain?

Information overload?

It’s bloody embarrassing anyway!

So now I need to go again next week to visit Maggie’s when the children present their donation to the charity and again, on Friday, when we have the secondary support group. There will be a pharmacist coming to talk about our treatments, side effects etc. I must write down all my questions this time. I certainly have a few as I attribute anything that doesn’t feel right to the chemotherapy when it might easily be some of the several others meds I take routinely. I have thought of visiting my local pharmacy and asking J, the main pharmacist who worked for 15 years in oncology at St James’s. But knowing the cause is one thing. Would I be willing or even allowed to give up the offending medication?

Then I have a CT scan to come. It’s actually a month late already.

Meantime, a bit of detective work has led to a delightful online purchase. It started with one of the usual Waiting Room Feet photos in one of the Facebook support groups. The coat caught my eye and… there it was in Next. Ordered and delivered within 48 hours! I just hope this woman isn’t a patient at St James’s. I think two such coats might be a bit much for the poor staff and patients! Certainly, no one is going to miss me in this coat!

It IS the blue of the other pic -
In Your Face Blue!

278. Sadness and smiles

The smiley bit

It’s been a strange few weeks but reality hit again when the lovely George who was a member of our support group at Maggie’s died yesterday. Again, I could shed tears for her but still not for myself. George’s death came as no surprise. I have watched her this year struggling with various treatments, arriving full of optimism one month, another month sitting and chatting quietly with no hair and such yellow skin you just knew her liver was packing up. Then off to another treatment - and not one word of complaint. Like Fran, she was one of Dr U’s patients and so sad he was leaving - and she died 5 days later. How do medical staff cope with all this??

What makes me angry is, as you can see from the photo, George was so young. The statistics still say only about 9% of Stage 4 BC cases are under 45. Try telling that to my group, most of whom are young, like George, with young families they know they are going to have to leave behind. It is just so cruel and so unfair. Then you remember that fairness has nothing to do with this. it’s all down to luck, bad luck, unpredictable luck and more luck. George’s husband opened a JustGiving page this morning with a target of £1000 for Make2ndsCount. When I visited the page at about 3.30, he’d already raised over £3,500 which just proves how loved and appreciated George was. It’s over £4500 now. Ok, nothing like the millions Bowelbabe raised but it’s all going to help research into secondary breast cancer. I know George will have approved and it gives her husband some purpose. Yet I still get no sense in myself that this is going to be my fate. Totally weird.

Easter came and my giant Cadbury’s egg went. I exaggerate - I still have a piece left so I’ve made it last 5 days. I could taste it better this year but it’s still not the same. It was accompanied by a delightful set of bunnies and eggs that Sheila sent me. I was having a rough time with cape tummy so no Easter Egg hunts in the garden but I had fun ‘hiding’ them at various places in the bedroom. I can’t find some of them! And it was all topped by a beautiful arrangement of golden tulips and blue hyacinths (thank god for autocorrect) from Trina. I think the hyacinths are going to last for ages. Then of course we have my dramatic amaryllis which is flowering beautifully but is so top heavy, it’s uprooted itself and won’t cooperate with our efforts to repot it. So it’s now got a kind of scaffolding to hold the beast in place. It’s going to be so stunning once it opens. Question: can I keep this one ‘alive’ for next year, something I’ve never yet managed!

The smiles came today. I had a lovely lunch with some former Parklands friends (and Parklands barely got mentioned) and Anne told me that her 2 older grandchildren (9 and 7) did another bake and lemonade stall, with flyers, personal invitations plus home delivery on orders! How good is that. It’s so good to know that, despite all the technology, homework, social media etc, there is still room for kindness and consideration. Apparently they did it for me and their friend’s friend and the money is going to Maggie’s. Bless them!! And the adults behind the scenes clearing up the mess, keeping the kids safe… Hard work and much appreciated xx

Clinic tomorrow - despite the doctors’ strike (which I whole-heartedly support). I wonder who I’ll see…

Anya and Emmy far left

277. Bemused but in a good way

 Update on cancer: All well. Scan results all more or less negative. Tiny progression of tumour (tell my eye that. It feels like something is pressing on it) and, although I have lots of new skin mets, the back of my neck feeling like I’ve an exaggerated version of nettle rash, there is “nothing life-threatening”. Plus, the referral to Ophthalmology has been accepted this time, presumably because Dr U phrased it differently, so maybe something can be done to lift my eyelid a bit so I don't look like someone’s punched me or I’m winking lasciviously!

Never search images for ‘lascivious’

So why do I feel ambivalent? It’s not because Dr U is leaving (next Friday) though it is hard when someone has been there, tracking my progress, looking for alternative treatments and making the right calls. I was introduced to T, a prescribing nurse who will be taking me on, and I’ve been added to Dr K’s list. He’s the oncologist I consulted privately in 2018 who persuaded me to move into the NHS at St James’s (thank god I did) and he’s the head of the team. Dr U says he doesn’t think there’s a better oncologist anywhere. To be honest, I don’t care about ‘better’, I care about having someone who genuinely cares, checks what’s going on regularly and who will play the waiting game Dr U has played: there have been several times when a different oncologist might have decided it was time for another treatment whereas Dr U advised me to wait and see - and each time, my body rallied round and cape carried on working.

So why do I feel ambivalent? I feel a bit of a fraud. Yes, I’m constantly exhausted and the last 4 days have been spent mostly in the loo, including at the hospital, but I don’t feel pain, it’s hasn’t (yet) spread to any invisible organs, and I don’t keep getting admitted to hospital and wired up to drips. This is what is happening to almost everyone in the support group. I just plod along and feel a fraud. I know my cancer is just as bad and, perhaps, more dangerous but there’s no evidence of it. I look fine, apart from a swollen eyelid and a huge pot belly. I look healthy despite the constant fatigue (apparently cape is attacking my bone marrow - great!) and I certainly don’t look like a cancer patient, whatever that means. It’s a case of Imposter Syndrome, I feel. Yet I asked some pretty difficult questions like what’s going to happen, what changes can I expect to see - and it just doesn’t register with me at any emotional level. I just accept it and move on.

It won’t last of course. But I’m unique in the hospital and, great though that sounds, it reminds me that actually nobody really knows wtf is happening here. And I’ve no one or no case study to compare myself to. Really, I should be grateful, shouldn’t I? And I am, I definitely am.

I’ve been rereading my blog from the start. I’ve got to the end of treatment and the start of the pandemic. It’s been bittersweet. I can smile at the optimism of “It’s only a disease” yet I’m taken aback by casual references to a sign or symptom where I should have thought it’s coming back and done something about it. It wouldn’t have made any difference but there actually were signs before I’d even finished treatment. Yet here I am with “nothing life-threatening” yet a diagnosis of Stage 4 Triple Negative breast cancer, for which the prognosis is crap. And it’s 2 years on, still on first line treatment, I can see future research into TN having to add a rider that there’s always one awkward bugger who defies the odds!

Now, one thing I’ve noticed is that this blog is DULL so I am going to have to find ways of enlivening it a bit. This is what happens when your life revolves around bloody cancer - there’s no room for anything else! So, to make you smile, this is the reverse of my first attempt to crochet to a pattern. Imagine, every one on those threads has to be woven in - and I’ve done over 150 already!! Lesson - learn how to weave in during crochet process, as with knitting. Have a good laugh at my expense :

276. Counting the days

 I was all fired up on Friday to say farewell to Dr U but it turns out I get one more appointment. Den and I arrived early and, miraculously Dr U collected me early (I think the fact that they have to walk out of the office to get each patient is probably to ensure they do their 10,000 steps and don’t get varicose veins. Otherwise, it’s grossly inefficient!). I said I’d come armed with questions for our last session and he said he had plenty of time. He gave me 45 minutes - and I was the one trying to leave!!!

The weird thing was, I sat talking to him, very relaxed, and it dawned on me that I’ve forgotten what he looks like. I see the eyes and the dusting at the sides of a light beard, I see his face shape and dark hair, his clothes, the way he bustles in his brown shoes, taking surprisingly small steps for his height but covering the ground at great speed, but I have no idea what his face is like any more. Now, I’m a face person. I’ve always read faces quite well. You can’t read an NHS mask!

He recapitulated on the two MRIs, giving me more details and explanations. We looked a my bloods and, although my blood markers are stable around 30 (they used to be stable around 18), my tumour marker is concerning for me as it’s on an upward trajectory. I suggested that was odd since the MRI showed my tumour is progressing more slowly than in previous scans - and he stated the obvious, something that just hadn’t occurred to me. Duh! Each of my skin mets is a tumour in itself. The two in my hairline that keep hardening and softening a bit but are definitely bigger are where the tumour action is. Dammit.

We discussed future options (he still wants me to continue the capecitabine for as long as possible). The “exciting new drug” turns out to be nothing specific. Trodelvy is still an option but he’s not keen on it for me because it’s very harsh. Enhertu is not yet available but trials are ongoing and he anticipates that may be an option. But he mentioned readdressing immunotherapy as conditions have changed. It’s no longer only available as first treatment and it can now be combined with a wider range of chemotherapies. Basically, TN cells don’t send up the red flag normal unhealthy cells are programmed to do to alert the immune system to go on the attack. TN has self-preservation built into it. What immunotherapy does is overcome that obstacle and get the immune system fighting anyway. Once the TN cells are exposed, in comes the chemo to kick their proverbial asses. The problem is that the immune system initially has no target so it attacks other things that may have been perfectly healthy - so you can end up feeling shit regardless.

It turns out I won’t have my ‘own’ oncologist. From April, the department will offer a different service - two specialist nurses (I thought the way he kept singing their praises was overkill; maybe to reassure me, maybe he has a crush) and any of the remaining oncologists. But I won’t see an oncologist every cycle; I’m more likely to see one of the nurses or the pharmacist. Although it doesn’t give me the one-to-one attention that I realise has boosted my morale and my confidence a lot, in a way it sounds positive - that my cancer isn’t considered to be immediately life-threatening. That’s good, isn’t it?

I said about almost having imposter syndrome since, apart from the fatigue and the usual Cape tummy, I seem to have it relatively easy. Of course he didn’t agree but he did pick up on my confusion about how some people seem to find their cancer has changed, maybe from hormone-receptive to negative, and how can we be sure things haven’t changed since the original diagnosis, particularly since it’s not conforming to type? He didn’t take offence at what was obviously a challenge. He talked about possibilities like finding something like the BRACA gene and perhaps it was time for genome sequencing (lost me there lol) but my biopsy sample was pretty useless now as it’s been bathing in formalin (my stomach immediately lurched as I was taken back to the Biology lab, aged 14 and working on the same revolting rat stinking of formalin every bloody week!). So I’ll probably need a fresh biopsy, not of my eye but of the largest skin met (that’s when it registered my neck and face are riddled with tiny barely visible cancer tumours. Ugh double ugh!

Then a brainwave struck him when he asked if I’d had my bloods done. He checked and, yes, I qualified for the fast-track service. Just ignore the usual Phlebotomy queue and head for Bay 3, turn right and pick up a yellow number card. I’d be out in minutes. 40 minutes later, I was set to go to Support Group, which starts 11-11.15. It was 11.20. 40 minutes, fast track!!! Fortunately it was the diminutive girl with a multitude of amazing little plaits. She gets straight in, none of this faffing looking for blood, and is done in a minute. She didn’t let me down. Question: do I worry for three weeks what the tumour marker is doing or do I park it? Obvious answer. I’m usually good at parking.

Oh and I’m instructed to look a what’s happened to that urethral caruncle ffs. It’s easy for a man to say. It’s gymnastics for a woman!!

Support Group was completely unfocused - we all seemed to be telling our stories, sharing our experiences. There were a couple of older women there (yippee) but the group definitely is for younger women and, for some odd reason, I find their experiences heart-wrenching. It’s not that I think I’ve lived my life, I’m not losing that many years; it’s more the fact they all but one have young families, children who may not have a mother to watch them graduate or help them through their first pregnancy, may not even have a mum to nag them to do their homework, criticise their makeup and say “that dress is way too grown up for you!” Then the one who can’t reconcile herself to the loss of any hope of having a family. It’s so bloody unfair.

We also talked about Fran and Laura, the woman I didn’t get to meet, both of whom have died in the last few weeks. We asked about loss, about how their suffering made things all too real to us. But, you know, the whole meeting was uplifting. Then I came out, spotted Dennis sitting on his own by the exit, face devoid of any expression as he’s drifted into his own world…I say face devoid of any expression but really it was complete and utter misery. Spell broken, back to convincing D that today had been good. He’ll never get it.

Now I am facing the task of organising paperwork. Yesterday I tidied the bedside drawer, threw away packs of paracetamol (use by 11/21) and tidied the bedside cabinet top. Look, that may sound pathetic to you lot, but to me, it was a big achievement. I even found my Happy Jar, with notes written in 2020. Ah, those were the days. No cancer, no chemo, some energy…cancer in the past and definitely not in the future. Is it best not knowing what’s coming next in life? You can’t plan for everything.

I think I’m going to start my Happy Jar afresh.

275. Reality check

It’s been a hard week emotionally. First, a young woman I never met but felt I’d got to know through the Facebook support group she set up died. She’d been more seriously ill for a couple of months, in and out of hospital.

Gemma was 34 when she first got cancer and 36 when diagnosed with metastasis. She soon discovered there was little support for secondary breast cancer so set up the Stage 4 Deserves More Facebook group to facilitate communication and mutual support between women with Stage 4 breast cancer. She was always very open about how she fared but always there to offer support and advice from her own experience.

She organised fact-sheets on the basics Stage 4 women needed - advice about employment rights, state benefits, travelling abroad (all the stuff I don’t need lol) - and signposted members to other relevant sources of information. She set up break-off groups where members could grieve their losses without frightening off newcomers and where families of people with Stage 4 breast cancer could exchange experiences, seek and provide support etc without having to see distressing posts from women at the end of their tether.

She had two young daughters, Ruby and Scarlett, and rather than shield them from the inevitable, she gave them the opportunity to make active contributions. They helped her put together the Welcome Packs for new members - I remember how touched I was to receive mine. Little pampery things like an eye-mask, hand creams, face pack; helpful things for treatment like tissues, wipes, word-search books, a pen and notebook - just little things that mean nothing till you realise how badly you need them. More recently she’d worked with her hospital to create Emergency Packs for women admitted to hospital at short notice, a brilliant idea that has spread to other hospitals.

How did she fund this? She never missed an opportunity to put Stage 4 Deserves More to the forefront. Every time I’ve won the Premium Bonds, each Christmas and birthday time, I’ve gone to Amazon Smile and I’ve purchased items from Gemma’s wish list. Then Amazon delivered them directly to her and into the packs they would go. Each tiny contribution from Amazon added to the fund. There were Just Giving pages, sponsorships - and negotiations with firms to provide discounts, such as the spa breaks I’ve not had, comfy pjs and other little luxuries we members might enjoy. She ran a monthly online raffle for members, knowing that the smallest surprise can bring light to the darkness. She sent out free copies of helpful books to mothers who have to explain their condition to their condition. She seemed to think of everything!

She and her husband also set up the Gem Foundation that was dedicated to fund-raising at every opportunity and so successful was it that S4DM began to fund research into metastatic breast cancer. 

And all the time, she was on that treadmill of treatment, improvement, decline, new treatment…. I lost track of how many times she was hospitalised, yet she kept adding yet another new step in her contribution to the world of Stage 4 breast cancer. In January, she and her husband arranged a huge 40th birthday bash (huge in that every member of S4DM was invited - and there are 1330 members!!), unfazed by being bloated by steroids and twice her pre-cancer weight. It had to be postponed because of another bout in hospital. But postponed, not cancelled. She would never concede defeat. Sadly, this time she didn’t come out of hospital. 

The outpouring of grief in the Facebook group was astounding - this woman had touched so many lives in such a positive way.

Then, on Monday, the sister of one of my Secondary Support Group members posted that her sister had died. Fran was what I’d describe as a force of nature. She befriended me when I first joined the group and I assumed she was an old hand. Not so. She was diagnosed months after me; she just discovered the group sooner. Our cancers were different but both of the rarer variety - perhaps that’s what drew me to her. Whereas I was the only member there with Triple Negative breast cancer, she was the only one there with the BRACA gene. Both of us had cancers harder to treat and with a shorter prognosis.

Fran was already on her second line treatment when we met. She was on paclitaxel (though it took me 3 meetings to realise she was wearing a wig and was as bald as a coot) and was optimistic because she’d responded to it well. I remember paclitaxel from primary treatment - 9 sessions nearly broke me (and don't overlook that car crash in the middle). Fran was onto her 21st when she was told it was no longer working. But during that time, she’d tucked her son up in his new bed at university, joined a wild swimming group, gone kayaking with her 15yo daughter and danced the night away at her 50th birthday.

Then she told us she was going into St Gemma’s for some respite care. She never went home again, deteriorating to the point where her oncologist (my own Dr U) withdrew treatment and she was put on a palliative care plan. She still stayed in touch via our WhasApp group, then asked her husband to send us messages - till he sent a message that he’d been told she was on her way out. It took more than 2 further weeks for the end to come, time when she was too weak and too ill to do anything. When her sister announced she’d died, all I could feel was relief for her. We have a humane approach to animals’ suffering, but not to human beings’.

So yes, a reality check for me. I do have a life-threatening and life-limiting condition and unfortunately, yes, it does do what it promises to do. Yet even now, it feels unreal. I experience all the frustrations, indignities and discomforts of being treated for MTNBC yet there’s part of my mind that just doesn’t register the fact that my fate will be no different from the fate of these two amazing young women - yes, young to me!! I call this a reality check but it makes no difference - it still feels unreal. And I’m grateful for that. It gives me an equanimity and peace of mind I never expected, certainly not in a woman who has thrown away her whole life anticipating ‘terrible’ things that have never happened.

Now I have to gird up my loins and face that awful moment of letting my oncologist move on, leaving me and my peculiar cancer to perplex someone else. I’m not looking forward to this. I wonder if the tears will come at last?

274. All is well…(as can be)

Today: Another visit even more undignified than the Gynae one. A doctor had come to examine me, though usually it's a specialist nurse who does the cystoscopies. At every stage they explained to me the steps of the procedure, which I have obsessed over for the last 3 days, so nothing new. I was moved from room to room, one to loosen my clothing, one to remove it (though she kindly said I could leave my top clothes on and put the gown over it all).

The theory

Who designed those gowns? Who decided that 6 inches of tape is sufficient to tie into anything secure except a knot? And who believed that fumbling fingers could cope with rear fastening? I actually got an irritated “Let me tidy you up” when a third nurse appeared.

The treatment room was well staffed, two nurses twiddling their thumbs, an assisting nurse who kindly blocked my view when she brightly pointed out I could see everything that was happening on screen and I replied that, having secondary cancer I had no wish to see, and a young doctor. They all look so young now. I feel so old! The doctor then explained (yet again) what would happen and I explained I wasn't a good patient and then he started poking around. That was a bit painful as his gloves were dry and brushing against sensitive areas was a bit much. Then the nurse “cleaned me up” with a baby wipe and then a surge of warm water which turned out to be local anaesthetic. In went the catheter, higher and higher (“Bear down” I was urged - how should I know what that means??) and then the cystoscope which had a very thorough look, did a twirl inside my bladder and then halted. The doctor asked me to look at the screen. There was a benign cyst there, causing no trouble and probably there since childhood. I watched the pretty colours as the cystoscope was removed and then I got the diagnosis. Probably a urethral caruncle (yes, I had no idea either), not harmful, unlikely to cause any problem but - here we go - considering my medical condition, he wants me to see a consultant in 4-8 weeks.

The reality

It was completely painless, the table beneath me was soaked and I had to dry myself up - they’d inserted warm water into the bladder so no wonder I was bursting for a pee throughout. I probably peed over the doctor. Occupational hazard? I am grateful I’m not a man tho - all that distance up the urethra in a flinching penis - ouch! BUT now I can stop fretting about it all. It just happened. Coincidence. I confess, I did feel a degree of anxiety (hardly surprising after what I originally saw) and feel relieved that he didn't even biopsy the tissue (which “sits at 6/7 o’clock externally. So the analogue clock survives - for now).

Friday: Clinic day, my last but one session with my lovely Dr U. It was what I’d describe as quiet chaos, one oncologist not arriving till 9.30 so the others had been dealing with her caseload. After an hour, I enquired at Reception and was told there was something of a delay but the oncologists were all doing their best to catch up - so I’d be seeing….Dr D, the last one on earth I would choose. She was cheery: “It’s a long time since I last saw you.” Reply: “Yes, you told me the cancer was gone and I was all clear…and here I am again.” No reaction. The appointment was like all her consultations - she didn't even acknowledge a student doctor was present (obligatory, if not good manners) But she’d gone through my notes so was kind of up to date:

Neck MRI: some enlarged lymph glands in my neck but no cancer detected. probably inflammation. When I said one was swollen permanently, she didn’t react. The scan picked up two small lumps in the back hairline, not doing any harm. Well, this is the first time any of my poor little skin mets has been officially acknowledged, so cause for celebration. They are the Big Boys now.

Head MRI: a tiny progression compared with last time, maybe 1mm. I know all the small ones will add up to a large one but for now, that sounded very good news.

Markers are steady. They haven’t dropped but that’s not essential. They have levelled out at 28 (9) and 25 (18).

All in all, I am StayMay (not quite Stable Mabel but relatively stable).

So now all I have to do is start cycle #32 tonight (always hard) and carry on as I wish to. Definitely not what my lizard brain was expecting.